Stuff

by Gail Steketee

  Despite the multiple heavy-duty cleanings and Susan's feedback, Daniel's behavior did not change. He insisted that others misunderstood him and were misguided in their concerns. Daniel was not someone who would volunteer for therapy. Even if he were forced into treatment, it would be unlikely to have much effect. Ultimately, I was unable to provide Susan with the key she'd sought to unlock the problem of obstinate hoarders, for the same reason that no one can help a non-insightful drug addict or anorexic: the patient has to want to change.

  For those lacking insight into their hoarding, heavy-duty cleanings are seldom more than a short-term fix. The condition of the home may change temporarily, but the collecting behavior does not. Perhaps it would be impossible to get Daniel to stop collecting, but getting him to organize or store his hoard in a different manner might reduce the risk to Edith and the rest of his family. In such cases, we encourage agencies to take a different approach. Instead of clearing out the home, we recommend working with the hoarder to determine what needs to be done to meet and sustain basic standards of safety. The effort requires the development of a personal and trusting relationship with ongoing contact. Though potentially costly, it may in the long run result in public savings by reducing the number of heavy-duty cleanings. Such an approach requires at least a minimum of cooperation and effort, however, of which Daniel seemed incapable.

  10. A TREE WITH TOO MANY BRANCHES: Genetics and the Brain

  I see too many options [for things]. I can't control it. My brain needs to be rewired!

  —Irene

  From observing hoarding in squirrels, some scientists have suggested that the sight of a nut triggers a genetically programmed set of behaviors that is otherwise locked away in the brain. The nut puts the squirrel "in touch with" the feeling of being hungry. Consequently, the squirrel gathers the nut and "squirrels" it away for later. This instinct may have evolved into a similar experience in humans who hoard. The sight of a possession puts the hoarder in touch with the feeling of being without the possession when it is needed. This feeling dominates his or her consideration of whether to save or discard the item.

  The possibility that hoarding is genetic has been the subject of considerable speculation. Are these behaviors like the innately driven nest building in birds or nut gathering in squirrels? Ethologists, scientists who study animal behavior, believe that such behaviors are instinctual and not learned. Konrad Lorenz, perhaps the most well-known ethologist, called such instincts "fixed action patterns," or FAPs. He thought that FAPs were inherited programs that, when engaged, follow a distinct and rigid sequence of behavior—like nut gathering in squirrels. They may be passed up the evolutionary chain and stored somewhere in the distant recesses of the human brain. Some ethologists have speculated that brain circuit malfunctions might set off long-dormant FAPs by mistake. The result could be a chain of behaviors that make no sense in one's current environment—such as foraging for and saving useless objects.

  Animal models of hoarding have several drawbacks as explanations for human hoarding, however. For most animals that hoard, the behavior is adaptive and part of normal species-specific behavior. This is less clearly the case for humans. Also, most hoarding in animals involves food, while most human hoarding does not. If human hoarding is an evolutionary expression of the hoarding that animals do, we might expect more hoarding of food. It is possible, however, that humans, who are higher on the evolutionary chain, have expanded the category of "needed items" to include nonfood, personal use, or comfort items. This might explain why they hoard clothing, decorative items, and maybe even information. Perhaps human hoarding is closer to nesting behavior in birds and other animals that forage to feather their nests.

  The role of the family in hoarding is just now coming into focus, especially the role of family lineage and biology. Since the beginning of our work on hoarding, we've been struck by how often people describe parents or other relatives who hoarded or were "pack rats." In one of our earliest studies, more than 80 percent of our subjects reported a first-degree relative with similar problems. Recent studies have borne out the familial nature of hoarding. The OCD Collaborative Genetics Study (OCGS), a consortium of six sites funded by the National Institute of Mental Health to study genetic linkage in obsessive-compulsive disorder, recently published the results of a study of siblings of people with OCD. Among the large number of people in the study, those who hoarded were most likely to have siblings who also hoarded.

  As a follow-up, the consortium conducted a genome-wide scan for chromosomes and regions on those chromosomes that were linked to hoarding. For families with two or more hoarding members, the scan found patterns of genes in a region on chromosome 14 that were different from those found in families without hoarding members. Why this chromosome would be related to hoarding is unclear. Genes on chromosome 14 are important for establishing immune system responses and have been implicated in the development of early-onset Alzheimer's disease. These problems have no apparent relationship to hoarding, however. A study of Tourette's syndrome found a familial linkage pattern for hoarding on a different set of chromosomes. Perhaps different types of hoarding are associated with different genetic disorders.

  The results of the OCGS are still tentative and will need replication with a larger sample of people who hoard and a comparison sample of people who do not have these or other OCD symptoms. Nevertheless, these findings are intriguing and suggest that nature, as much as nurture, may play a role in hoarding. Nowhere is the genetic component of hoarding more noticeable than in identical twins.

  The Twins

  When I picked up the phone, the caller announced, "Dr. Frost, Brother and I are modern-day Collyer brothers. What can you tell me about hoarding?" Alvin's speech was abrupt, and his words were clipped. I agreed to send him some material on hoarding and described our book project. He hung up without saying goodbye. I didn't expect to hear from him again. A few weeks later, however, he called to say that he could see himself in our writings and was amazed at how close our descriptions were to his world. He wanted to know more. Initially, he expressed an interest in finding treatment, but he was sure "Brother" would not, as "he likes his things too much." Although neither of the brothers pursued treatment in the end, they agreed to be interviewed, and I have since spent many hours with them.

  Alvin and his twin brother, Jerry, did resemble the famous Collyers in some ways. Both sets of brothers came from very wealthy families with a father who was a well-known physician. Both were intelligent, highly cultured, and interested in the arts. Beyond that, however, the similarities faded. Alvin and Jerry had a wide circle of friends and acquaintances, nothing like the "hermits of Harlem." And whereas Langley Collyer was the hoarder and Homer simply went along, both Alvin and Jerry hoarded. Bigtime.

  Alvin didn't say much about what they hoarded as we chatted in the sitting room of the hotel where he lived. Tall and slender, around fifty years old, dressed in a slightly rumpled suit and bow tie, Alvin quickly took control of the conversation. He spoke at the same rapid pace as in his phone call. He asked a number of questions about our research and about hoarding in general, but he avoided the topic of his own hoarding. He was not yet certain he wanted to speak to me about such a personal subject. After thirty minutes, Jerry—dressed identically in a rumpled suit and bow tie—arrived and reminded Alvin that he had an appointment. He spoke in the same rapid pace and tone, but with a hint of hostility and without the apparent curiosity of his brother. I got the impression that the interruption was staged to give Alvin a way out if he wanted to take it. Luckily for me, he didn't. From my initial encounter over the phone, I expected an angry and unpleasant man. Nothing could have been further from the truth. Alvin was engaging and inquisitive and cared deeply about the people in his life. His descriptions of his and "Brother's" lives were vivid, literary, and nuanced.

  Their family wealth left them without the need for an income. However, Alvin worked as an event organizer and was very good at his job. Most of his
events were dinners and fundraisers celebrating the accomplishments of others, including authors, artists, musicians, politicians, and athletes. I attended several and watched as he worked the room. He knew everyone there—not just their names and what they did, but the details of their personal histories. It was clear that he liked all kinds of people and used his charm and grace to "collect" them. His collections of people formed his community, and I had become a part of it. Both brothers were always eager to meet with me and talk about their attachments to possessions, as well as other aspects of their lives. Although I suggested that they call me by my first name, they always addressed me as "Dr. Frost," a designation Alvin said was more comfortable and consistent with the way they were raised. He spoke excitedly about his work and his friends and disparagingly about his hoarding.

  Although Jerry's rapid speech and intonation matched that of his brother, his affect was different. Whereas Alvin was exuberant and outgoing, Jerry was apprehensive and reserved. He, too, cared deeply about those around him, but his caring came out as worry. He worried about anything that could go wrong. He worried that he might run out of gas when he drove his car, so he was forever stopping to fill his tank. On his most recent trip to their boyhood home, a nineteen-room mansion several hours away, he kept a close eye on his gas gauge. When it moved off the full mark, he felt compelled to stop for gas, even if he could only add a few gallons to the tank. The trip took an extra hour.

  Mostly, Jerry worried about Alvin. He worried that Alvin did not know how to take care of himself and that he was too trusting of other people. Jerry took care of many of Alvin's day-to-day responsibilities: paying his bills, sorting his mail, arranging his doctor's appointments, and doing his taxes. The details of life never troubled Alvin, perhaps because Jerry took care of those things for him. Alvin was absent-minded about money, seldom keeping track of or even carrying cash. On several occasions while complaining to me that Alvin was naive about others and easily taken advantage of, Jerry mentioned the sad case of Jonathan Levin, the son of former Time Warner CEO Gerald Levin. Jonathan eschewed the life of luxury and instead became an English teacher at a Bronx high school. One of his former students learned of his identity and, convinced that he was hiding great wealth in his apartment, attempted to rob him. When he found little money, he tortured Levin for his ATM pin number and then killed him. The story captured Jerry's imagination in a profound and ugly way. He repeated it to me more than a dozen times, always in the context of worries about Alvin: "Dr. Frost, I think about this every day. Alvin doesn't have the common sense to stay away from these people." Jerry worried that Alvin would likewise be murdered by one of the many people he befriended.

  Jerry's worries about Alvin consumed him. Whenever Alvin was within earshot, Jerry complained to him about his carelessness, the people he associated with, and the activities he pursued. At times the relationship between the brothers was so tense they could not be in the same room. Even in the presence of friends and business associates, they bickered. The topic was always the same—Alvin's risk-taking behavior. In private, Jerry insisted to me that Alvin could never survive without him and that it was his job to protect his twin. He seemed to have no clue that his worry was over-the-top. "He treats me like I'm ten years old," Alvin complained. "Jerry is just like my mother. He will invade my life in every way, and he can be nasty." When Jerry felt Alvin wasn't paying attention to his concerns, he became increasingly angry and upset. Although Jerry felt that Alvin discounted him, it was clear that Jerry's distress registered with Alvin. After one of their episodes, Alvin said to me, "When he gets upset, it's like wind chimes inside me." Alvin had access to a number of other rooms in the hotel, and he admitted using them sometimes to hide from Jerry.

  Jerry took me on a tour of his and Alvin's separate apartments. Each had an identical penthouse apartment in the hotel with a huge "great room" of approximately eight hundred square feet and a two-story-high ceiling. Adjoining the great room in each apartment were a dining room, bedroom, bathroom, and galley kitchen; there were two upstairs bedrooms and an upstairs bathroom. We went into Alvin's apartment first. Every square foot of the great room and dining room was packed with works of art and period furniture: eighteenth- and nineteenth-century paintings, sculptures, busts, antiques, lamps, jewelry, and more. Most of the works were extremely valuable. He pointed out several large seventeenth-century vases that he estimated would each sell for more than $10,000. It is hard to imagine how much the art in this room was worth, but it had to be at least hundreds of thousands of dollars.

  In contrast to many homes of hoarders, the great room had no pathways. Crossing the room meant stepping over or on things. In some places, the objects were piled up to six feet high. No floor was visible. Although Jerry's apartment was in just as much disarray, he was more concerned about the safety of the things in Alvin's apartment. He complained that Alvin was not careful about keeping the great room locked, so he took it upon himself to put some of the heavier urns (ones no one could easily walk away with) in the hallway blocking the door. The room reminded me of the Ming Tombs in China, where the emperors had stuffed their burial chambers with all the treasures of their reigns. The layers of dust indicated how long these objects had lain dormant. Jerry found this comforting since it meant no one had touched any of these things.

  Both twins had a form of photographic memory. For each of his rooms, Jerry carried a mental image of exactly how it looked. When he entered the room, he knew immediately if anything had been touched or moved. Given the chaotic appearance of the rooms, this was a remarkable achievement. If something had been moved, Jerry's image of it was no long "placid." This was more a sensation of disruption than anything else, a not-just-right experience, or NJRE (see chapter 5). He had to study the room to decide what had been moved and then "recalibrate" his image. It usually took him about thirty minutes to do so.

  In addition to the works of art, there were clothes strewn about and hanging from every conceivable hook. They covered most of the kitchen, making it unusable. There were few papers but thousands of business cards, each with notes written on the back. Jerry complained bitterly about Alvin's penchant for collecting cards and never looking at them or being able to find them when needed. Jerry confessed that he had taken to throwing away some of them for his brother. The stairway was covered with things as well, and although he never showed me the upstairs rooms, he assured me that they were at least as cluttered as the downstairs.

  After seeing Alvin's apartment, we visited Jerry's. We had to move a large and very heavy pot away from the door to get inside. The apartment was nearly identical to Alvin's place, except for the absence of business cards. It contained large eighteenth- and nineteenth-century paintings, Italian busts, tapestries, furniture, and jewelry—at least as many objects as in Alvin's apartment. As in Alvin's space, there were few unobstructed paths. Most of the great room was inaccessible, blocked by vases, antique lamps, and grandfather clocks. Clothes lay everywhere. Unlike Alvin, Jerry apparently never hung his clothes up. All these things, Jerry explained, came from their parents' home or from buying sprees. Jerry knew a lot about each piece in the room. "Everything here has a story, and I remember them all. If I get rid of any of it, the story would be lost."

  Jerry spoke with dismay about the state of the apartment. He recognized that the works of art were in danger of being damaged by the clutter, but he was at a loss about what to do. "Our parents would be horrified if they saw our apartments," he said. We spoke briefly about strategies for organizing Jerry's great room. He said that at one time, early in their stay here, the room was beautiful, and they had used it to entertain dignitaries, politicians, and royalty.

  The next day when I returned to meet Alvin, I waited in the lobby of the hotel. Jerry came in, obviously upset with Alvin. He said that Alvin had blown off the appointment. I asked Jerry if he would like to talk without his brother. He thought for a moment and with a wave of his hand and a pained expression said, "No, it's just hopeles
s." At that he walked off, and I wondered whether either of the twins wanted anything more to do with me. Jerry explained later that shortly after I had left the day before, he had returned to his apartment and tried to do some of the sorting we had talked about. He got confused and frustrated trying to make decisions about what to move and ended up breaking a wooden sculpture. At that moment, he gave up all hope of changing. Apparently, Alvin felt similarly. He called me a few days later to apologize. He said, "This is like a stool sample, and Doctor, there's blood in this stool. I don't like to think about it." The odd analogy was apt.

  The Parents

  Over the next several years, I learned a great deal about the twins and their history. Their father had been distant and strict, clearly not one to communicate warmth. Alvin described him as "verbally rough." Jerry recalled that his maternal grandmother intervened on several occasions when she felt her son-in-law's strictness had crossed the line with the boys and his wife. Both of the twins were afraid of him and his temper, and their relationship with him grew worse as they got older. Our recent research indicates that an absence of warmth, acceptance, and support characterizes the early family life of many hoarders, perhaps leading them to form strong emotional attachments to possessions.

  Their father collected books, magazines, and travel information, but he always kept his things well organized. "Everything in its place" was his motto. His mother, the twins' grandmother, also collected. She was a schoolteacher who had acquired and inherited a great deal of things and had kept all of them. When she died, the moving company that cleaned out her house wrote to the twins' parents to say that they had never seen a Victorian house so full.

  The twins' mother saved things as well—vases, china dolls, and teddy bears—and she was a world-class shopper. Both brothers reported never having seen her throw anything away. Only the intervention of the twins' maternal grandmother kept the house uncluttered. By the time their parents reached their sixties, however, the home had begun to fill up. When their mother became ill near the end of her life, Jerry estimated that there were five thousand paper bags scattered about the house. Although the twins kept their parents' house, they spent little time there. The basement was still filled with Kleenex boxes, paper towels, and more than one hundred dried-out deodorant tubes from the 1960s. Most of the other rooms were too crowded to use. Jerry said that when he visited the house, he slept on the floor in the living room because none of the beds were accessible.